alyheartsux3: Severe withdrawal - Trileptal, Gabapentin, Horizant

[alyheartsux3]

Hi all! I am a 22 year old female diagnosed with Bipolar Disorder I, Generalized Anxiety Disorder, and ADHD. I was heavily drugged at around the age of 14, and I decided to come off of many of my meds in the past year. Unfortunately, I do not have the history of meds/dosages for the past two years but may be able to obtain info from my doctor... 

Drugs Withdrew from:

1. Trileptal

2. Gabapentin

3. Horizant (form of gabapentin) 

• I was put on Trileptal (I believe 900mg) for Bipolar Disorder around the end of summer of 2017 I decided to come off the drug after about 5 months. I went off quickly, but did not stop cold turkey. 
  • Started experiencing tingling in my legs (against clothing or fabric) 
  • Started developing a noise sensitivity during this time. 
• Went on Gabapentin (I believe 900mg) in November/December for one month and a half, and had side effects. Came off with my doctor 
  • Experienced side effects including insomnia, anxiety, tingling back, chills, temperature changes, heart palpitations, panic attacks, noise sensitivity 
• Went on Horizant for 3 days had side effects, stopped for a day, took it again once, and stopped permanently after 4th day. 
  • Had brain zaps for a few weeks with tinnitus 
• Since stopping ALL 3 meds, I now have chronic side effects
  • Tingling (against clothes) 
    • Legs (***) front and back of thighs. Intermittent throughout day. Very unbearable.. 
    • In both arms (sometimes part of arm sometimes full arm) --less frequent but happens more than back/ribs 
    • Back (less frequent) 
    • Ribs  (less frequent)
      • Tingling happens for a few seconds with back arms and ribs. 
  • Noise sensitivity (hyperacusis) 
  • Touch sensitivity 
  • Head pressure (started after brain zaps from Horizant subsided.) Basically CONSTANT throughout the day.

 

***** I believe that all of my symptoms are from withdrawal from medications. The chronic pain/tingling against clothing or fabric is the most excruciating. I wonder if anyone knows if this will go away or if it is permanent damage??

Is anyone familiar with my situation? 

It has been about 2 months since I tried Horizant in February of 2018. It is April 2018 now

I don't want to put any more drugs in my body, especially not knowing if it will go away on it's own. 

I am a college student who is now going to drop out, even though I was doing great in school. 

All advise/ info helps!! Thank you!! 

 

[ChessieCat]

Drug signature on joining:

 

5 minutes ago, alyheartsux3 said:

I am mostly concerned about whether my withdrawal symptoms will ever go away (mainly worried about chronic pain/tingling mentioned) Do NOT want to go back on medications to treat any of my pain....

 

• I was on Trileptal for about 5 months. I went off in October of 2017 pretty quickly but did not stop cold turkey.
  • During and after stopping Trileptal, I started experiencing tingling in my legs (only against clothing) CHRONICALLY. I also developed a noise sensitivity that started around the same time.
• I went on Gabapentin to treat the tingling around November/December. I was on it for one and a half months  and experienced side effects. I stopped Gabapentin with the help of my doctor and experienced many dangerous withdrawal symptoms (some went away). (can go into detail if needed) 
• I tried going on Horizant (a form of Gabapentin) for 3 days in February of 2018  and experienced side effects. Stopped for a day. Went on for a day. And stopped. Had serious side effects only after a few days of taking the drug! 
  • Experienced brain zaps and tinnitus. Brain zaps lasted a few weeks, tinnitus lasted about a month. 
• I now have a variety of chronic symptoms: 
  • Head pressure (pretty constant throughout day. Started after brain zaps went away)  
  • tingling against clothing 
    • Both arms (will feel it in part of arm or full arm) 
    • Ribs 
    • Legs (cannot wear pants without feeling tingling in back and front of thighs) 
    • Back 
  • Noise sensitivity (doctors diagnosed as hyperacusis) - started when stopped Trileptal 
  • Touch sensitivity (started experiencing after going off of Horizant) 
  • I also have cognitive problems with my thoughts that has gotten worse 
  • Anxiety has been very severe since going off these drugs. Have panic attacks too. 
  • Developed OCD like behavior. 

 

Drugs Currently Taking:  Lithium 900mg (at night), Intuniv 1mg in the morning 2mg at night, Latuda 60mg (at night) 

 

 

Putting a SHORT version of your recent history of reducing or discontinuing drugs in your signature, with the drugs you are currently taking, when you started taking them, and their dosages, helps people understand your context when they read your posts.

 

[ChessieCat]

Hi alyheartsux3 and welcome to SA,

 

Thank you for completing your drug signature, however it is much too detailed for what we need.  I have put a copy of it in the previous post.  Please simplify your drug signature.  Many of the mods experience brain fog as we are going through our own withdrawals and we like to be able to glance at the drug signature to get the information we need without having to read through it.  Thank you.

 

Please also include a summary of the drug you were taking prior to 2 years.  Please keep it nice and simple.  We only need details for the last 2 years.  Date, drug and dose only, no symptoms or diagnoses.  The other years can just be an overview.  

 

This is the preferred format which is helpful for the mods.  Thank you.

 

A request: Would you summarize your history in a signature - ALL drugs, doses, dates, and discontinuations & reinstatements, in the last 2 years particularly?

• Please leave out symptoms and diagnoses.
• A list is easier to understand than one or multiple paragraphs. 

• Any drugs prior to 2 years ago can just be listed with start and stop years.
• Please use actual dates or approximate dates (mid-June, Late October) rather than relative time frames (last week, 3 months ago)
• Spell out months, e.g. "October" or "Oct."; 9/1/2016 can be interpreted as Jan. 9, 2016 or Sept. 1, 2016.
• Link to Account Settings – Create or Edit a signature.Before you begin tapering what you need to know

 

This is your own Intro topic where you can ask questions and journal your progress.  We suggest that members visit each others Intro topics so that can support and encourage each other.

[ChessieCat]

Thank you for simplifying your drug signature.  It is much easier to read.

 

You don't need the last sentence which I have struck out:

 

*Need to obtain full info from doctor.

 

• July 2017-October 2017 (took Trileptal, 900mg) 
• November 2017-January 2018 (took Gabapentin, 900mg) 
• February 2018- Took minimum dosage of Horizant for 3 days 

Drugs Currently Taking:  Lithium 900mg (at night), Intuniv 1mg in the morning 2mg at night, Latuda 60mg (at night) 

*Have been on Lithium for 10 years. Have been on Intuniv for 4 years. Started Latuda in beginning of 2017. 

 

Putting a SHORT version of your recent history of reducing or discontinuing drugs in your signature, with the drugs you are currently taking, when you started taking them, and their dosages, helps people understand your context when they read your posts.

[ChessieCat]

I suggest you add the year to the drug as shown below and remove the last sentence:

 

Drugs Currently Taking:  2008 Lithium 900mg (at night), 2014 Intuniv 1mg in the morning 2mg at night, early 2017 Latuda 60mg (at night) 

*Have been on Lithium for 10 years. Have been on Intuniv for 4 years. Started Latuda in beginning of 2017. 

[alyheartsux3]

Hi, I have been withdrawing from numerous drugs over the past year. I have been on Latuda since early 2017. Started at 40mg and was bumped up to 60mg in late 2017. I believe I have developed side effects and have started to taper from 60mg in April of 2018 working with my psychiatrist. My psychiatrist is very unfamiliar with withdrawal. 

I am currently at 40mg as of May 23rd, 2018 and have experienced severe chest pain, head pressure and anxiety. Believe anxiety/head pressure may have been side effect of Latuda all along. 

 

I am going to take a print out of the Surviving Antidepressants recommended taper schedule to my next psychiatrist appointment, as her recommended taper is too fast. I am unsure of how best to taper and avoid more symptoms. Took a while for insurance to approve 20mg tablets so that I could taper. 

 

Any recommendations that I can bring up at my next psychiatrist appointment for how to taper properly or cut pills? Anyone else have experience with side effects of Latuda/ withdrawal and how to properly taper? Thanks! 


 

[Altostrata]

Hello, aly, I moved your post here.

 

Good for you, you got the 20mg tablets approved.

 

Here are our Tips for tapering off lurasidone (Latuda)

 

Don't expect our gradual tapering schedule to make any sense to a psychiatrist. Very few know anything about tapering. The best approach is probably to explain you want to minimize drugs by finding the lowest effective dosage of each.

 

How do you talk to a doctor about tapering and withdrawal?
 
What should I expect from my doctor about withdrawal symptoms?

[alyheartsux3]

Hi,

 

I have gone off and on many psychiatric drugs in the past 7 years. I have been on psychiatric drugs for a total of 14 years. I started experiencing withdrawal syndrome a year or two ago as I continued to make medication changes, but I did not know at the time. I came off Trileptal in October 2017 and developed tingling in my legs (withdrawal symptom). My psychiatrist (unaware of withdrawal) sent me to a neurologist who prescribed Gabapentin for less than 2 months, and then Horizant for 4 days (adverse reactions).

 

My body is definitely super sensitized, and there is one more drug that I absolutely need to get off of (Latuda). I was on 40mg, then up to 60mg (total of one year) and have tapered down to 40mg again in the past few months. (I mentioned the 10% taper rule to my psychiatrist. She tapered me slower than they usually do, and I still suffered severe noise sensitivity! I don't know how to taper slower with insurance/ the pills. I have decided I am too sick to continuing tapering right now, despite how badly I want off of this poison. 

I'm scared of developing tardive dyskinesia from Latuda, but I am too weak to taper. Also question whether any of my symptoms are due to Latuda. 

My plan is to wait 5 or 6 months to see if my symptoms improve and then to start tapering again. Doctors say to go down to 30mg from 40mg, but I feel that is too fast as well. Just don't know how to taper slower, and I'm too weak right now. 

 

Does my plan to wait 6 months for my severe withdrawal to improve before tapering again sound good? Should I wait longer? I can't even handle Magnesium right now... I'm just scared of the side effects of Latuda/ also how difficult it is to get off of it the longer you are on. Again, I've only been on it for a year so far. 

 

All info is helpful! 

Best,

 

Alyheartsux3 

[alyheartsux3]

Latuda is a second generation newer antipsychotic. I've read many reviews about how difficult withdrawal is, even when on for a few weeks. 

[ChessieCat]

There are many existing topics on this site.  Please do a search before creating a new topic.  You can use the site search function or use a search engine and add survivingantipdepressants.org to the search term.

 

I moved the new topic asing about noise sensitivity to the existing topic:  increased-sensitivity-to-light-noise-sound-etc

 

[ChessieCat]

I've moved the new topic you created and added it to your Intro topic.  Your Intro topic is where you ask questions about your own taper and journal your progress,.  This keeps your history in one place.  It also helps other members/guests to see your questions and the responses.

[alyheartsux3]

I don't know know what to do anymore. Originally, I thought I was just suffering withdrawal from medications I was on briefly (Gabapentin, 2 months; Horizant, 1 week, and Latuda (I have tapered from 60mg to 40mg over a span of one month working with my doctor. Have been on for a year). All a short period of time. However, I realize my central nervous system has been destabilized by switching on/off so many medications in the past 7 or so years. I have read enough on SA to believe that this is also withdrawal from drugs I went off last year. 

 

My current symptoms: 

1. Emotional:

-extreme mood swings from feeling good to extremely irritable, cycling throughout the day. (I am rapid cycling Bipolar but this is extreme) 

2. OCD/intrusive thoughts

3. Anxiety 

4. Agoraphobia (mostly "i can't go places cause of my symptoms", not fear of places/people) 

5. Probably more i can't think of right now

6. Extreme memory loss (short term mostly, past year) 

7. Brain fog 

 

Physical

1. Brain zaps

2. Pulses (like a heartbeat?) in my legs/arms

3. Tingling (intermittent-back,legs, arms, stomach, ribs, against clothing & in my bare hands) 

4. Tinnitus in both ears 

5. Extreme noise sensitivity (saw a doctor that diagnosed me with Misophonia, said my ears are healthy, but everything also sounds so loud). Also noise sensitivity with my extreme mood swings throughout the day 

6. Head pressure (every day going on 4 months) 

7. Chest pain (on and off, some days without it) 

8. Loss of appetite 
 

I was on Lexapro for around 3 years I believe (highest dosage 20mg) and came off in June of 2017. I think I am being hit my withdrawal from Lexapro, possibly Zyprexa (Which I was also on for a few years/doctors took me off in Summer of 2017). I don't know if reinstating is possible with any drug, or if I just have to ride it out for years. 

 

 

[alyheartsux3]

I have decided to drop the Natural Calm Magnesium Citrate powder, as it was causing tingling on my face. The tingling on my face is going away, but the tingling throughout my extremities/body has gotten worse. Its hard to say whether the tingling is due to withdrawal or if my current medications (Latuda?) could be causing it/ other symptoms. 

Keeping my med combination as is for at least 6 months to let my body stabilize. Am going to be staying on medications for the rest of my life, so I believe my story is different than those coming completely off medication. 

[alyheartsux3]

Since I have gone down on Latuda from 60mg to 40mg (working with my doctor within about 4 weeks, then switching to 20mg in the morning and 20mg at night) Have been on Latuda for a little over a year, my mood swings have been extreme (in addition to other severe withdrawal from Latuda and other drugs gone off of). I do have rapid cycling bipolar disorder I but it was never like this. Switch from calm to irritable with noise sensitivity many many many times a day lately.

 

 I have decided to keep my med combination the same for a while so I don't destabilize further. Should I expect this to pass over time? 

[alyheartsux3]

Moderators? (Went down on Latuda from 60mg to 40mg in about 5 weeks about 2-3 months ago) Been at 40mg (20 in the morning, 20 at night) for about a month and a half. I have rapid cycling Bipolar (daily) but in the past week, it has been extreme (many times a day with noise sensitivity). Not normal for me.

 

Do have many other withdrawal symptoms (tingling in hands/back, pulses in arms and legs, head pressure, brain zaps) Have gone down on other drugs in past year. 

My therapist says its my chemical imbalance, go up on Latuda (20mg morning 30mg night or 30mg morning 30mg night) 

 

Went down on Latuda due to possibility it caused my hives, vomiting after taking my medications almost daily, extreme panic attacks/ possible akathisia 

 

Could this be withdrawal that will pass? Should I go up? Have experienced withdrawal from other meds in past year as well. 

[alyheartsux3]

Any Moderators? 

[alyheartsux3]

I've come off of a lot of medications in the past few years. I reduced Latuda (which I have been on for a little over one year) from 60mg to 40mg working with my doctor alternating days in a span of 4-5 weeks. I have been at 20mg in the morning and 20mg at night for about 2 months and withdrawal continues to get worse. I can't stand the mood swings and the extreme noise sensitivity.

Could increasing the dosage to 20mg in the morning 30mg at night (or 30mg in the morning 30mg at night) possibly reduce symptoms or make things worse? Concerned it will further confuse my nervous system but I can't handle it any longer. 

 

I understand my nervous system is already very destabilized. I was already experiencing tingling all over my body (legs 24/7), head pressure, chest pain, noise sensitivity, pulses in arms/legs, etc. 

It was mainly due to the vomiting that I decreased the dosage, but never thought to split pills 30mg in the morning and 30mg at night. 

[Altostrata]

58 minutes ago, alyheartsux3 said:

I've come off of a lot of medications in the past few years. I reduced Latuda (which I have been on for a little over one year) from 60mg to 40mg working with my doctor alternating days in a span of 4-5 weeks. I have been at 20mg in the morning and 20mg at night for about 2 months and withdrawal continues to get worse. I can't stand the mood swings and the extreme noise sensitivity.

 

 

When did you do this?

 

What is your current drug schedule, what times of day do you take your drugs and at what dosages? We need this information along with your daily symptom pattern, in a simple list format with time of day on the left and notation (symptoms or drug intake) on the right.

 

Please put ALL your drugs in the Drug Interactions Checker https://www.drugs.com/drug_interactions.php
and copy and paste the results in this topic.

 

17 hours ago, alyheartsux3 said:

Went down on Latuda due to possibility it caused my hives, vomiting after taking my medications almost daily, extreme panic attacks/ possible akathisia  

 

When did the hives start? Did they go away when you reduced Latuda?

 

There is no such thing as a "chemical imbalance."

[alyheartsux3]

I reduced Latuda from 60mg to 40mg starting in mid April going (60/50 one week 50 for another, 50/40 for another week or two, 40mg at night, and then switching to 20mg morning 20mg night in the beginning of June at doctor's recommendation. 

 

My symptoms have continued to change, and I was already in severe withdrawal before reducing Latuda starting in April. My parents were concerned about the vomiting nightly mainly and hives. 

 

Hives started about 5 months ago after I tried Horizant for 4 days in February (to treat the nerve pain in my legs I know now was caused by medication withdrawal) I had an adverse reaction in February, developed hives, along with brain zaps, tinnitus, increased noise sensitivity, increased tingling intermittently in arms, back, ribs, stomach in addition to legs, and have had hives ever since. (I believe hives may be withdrawal related) 

 

I still have the hives. 

 

I tried to outline my drug schedule in my signature. I'm sorry everything is very difficult to keep up with. I've given up on trusting the decisions of doctors. Scared to change anything, but I'm at a breaking point. 

 

 

What is your current drug schedule, what times of day do you take your drugs and at what dosages? We need this information along with your daily symptom pattern, in a simple list format with time of day on the left and notation (symptoms or drug intake) on the right: 

 

• Morning (About 10am or 11am) 
  •  Latuda 20mg  
  • Intuniv 1mg 
  • Fish oil (2 pills) of Dr. Tobias Triple Strength Fish Oil 
  • Sprintec (birth control) 
  • Levothyroxine 200mcg 
  • (HALF of a 250mg chewable GABA NOW supplement) 
  • CBDistillery brand 1000mg 15ml ( about 5 drops in the morning) 
• Night (around 8pm-9pm) 
  • Latuda 20mg 
  • Intuniv 2mg 
  • Lithium 900mg 
  • (HALF of a 250mg chewable GABA NOW supplement) 
  • CBDistillery brand 1000mg 15ml (about 5 drops at night) 

 

• Daily symptom pattern does literally change daily, but I will do the best I can to outline. Impossible to document everything, as it changes so much. In the past week I have had rapid mood swings with noise sensitivity randomly alone throughout the day. Usually noise sensitivity is mostly in morning, now it is throughout the day with mood swings. 

 

 

 

Daily Symptom Pattern: 

• (9:30am-10am)--wake up (pulses in my arms/legs against the sheets 
  • Get dressed (sensitive to sounds of clothing when getting dressed, as well as other sounds (keys, unlocking door to leave house, unplugging phone, Head pressure in morning briefly
• 10am- Eat breakfast outside of apartment due to irritability/mood swings with noise sensitivity 
• 10:30am- drive back to apartment to take medications (sound sensitivity to med box/keys/ many other sounds) 
  • OCD taking medications (checking over and over again) and locking car
• 10:45am-go for walk (sound sensitivity to feet walking/water bottles)
• 11am-noon come inside to eat in my room (irritable/mood swings due to sound sensitivity of everything in the fridge (been like this in morning/afternoon for about 2 months now since going down on Latuda. Especially evolving extreme noise sensitivity) 
• 1pm onward-mood a little more steady "overall" compared to morning for rest of day) 
• Late Afternoon - head pressure may come back briefly, along with brain zaps (especially by computer) and sometimes chest pain 
  • Intermittent tingling on ribs/back throughout day (can't document time-it changes every day, some days don't have it) 
• (In past week as of July 13th 2018) Late afternoon and evening- random mood swings with sound sensitivity (alone no one around me) 
• 9pm -Take medications 
• Around 11pm, fall asleep
  • Wake up throughout the night (at least 3 or 4 times at varying times) 
    • thirsty, need to use restroom, tingling in arms/back/legs against the sheets, pulses in arms and legs 

 

So sorry if unorganized. 

 

[alyheartsux3]

1 hour ago, Altostrata said:

 

 

Please put ALL your drugs in the Drug Interactions Checker https://com.drugs.com/drug_interactions.php
and copy and paste the results in this topic.

Hope I did this right. (Supplements and CBD oil not on interactions) 

Drug Interaction Report

Drug interactions for the following 5 drug(s):

My Interactions List: (Unsaved)
Lithium Carbonate ER (lithium)
Intuniv (guanfacine)
Latuda (lurasidone) The interactions information for this drug may not be up-to-date. More...
levothyroxine
Sprintec (ethinyl estradiol / norgestimate)

Interactions between your drugs

Moderate

ethinyl estradiol  levothyroxine

Applies to: Sprintec (ethinyl estradiol / norgestimate), levothyroxine

Before taking ethinyl estradiol, tell your doctor if you also use levothyroxine. You may need dose adjustments or special tests in order to safely take both medications together. If you are already taking ethinyl estradiol and levothyroxine, your thyroid levels may need to be measured if your dose of ethinyl estradiol is changed or stopped. You should notify your doctor if you have symptoms of low thyroid such as tiredness, feeling cold, constipation, unexplained weight gain, depression, joint or muscle pain, thinning hair or hair loss, dry skin, hoarseness, and abnormal menstrual periods. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using your medications without first talking to your doctor first.

Moderate

lithium  lurasidone

Applies to: Lithium Carbonate ER (lithium), Latuda (lurasidone)

Using lithium together with lurasidone may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating. Some people, especially the elderly, may also experience impairment in thinking, judgment, and motor coordination. You should avoid or limit the use of alcohol while being treated with these medications. Also avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medications affect you. Rarely, a syndrome consisting of weakness, lethargy, fever, tremors, confusion, abnormal muscle movements, and increased white blood cells and other lab values has also been reported during combined use of these medications. Talk to your doctor if you have any questions or concerns. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Moderate

guanfacine  lurasidone

Applies to: Intuniv (guanfacine), Latuda (lurasidone)

Lurasidone and guanFACINE may have additive effects in lowering your blood pressure. You may experience headache, dizziness, lightheadedness, fainting, and/or changes in pulse or heart rate. These side effects are most likely to be seen at the beginning of treatment, following a dose increase, or when treatment is restarted after an interruption. Let your doctor know if you develop these symptoms and they do not go away after a few days or they become troublesome. Avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medications affect you, and use caution when getting up from a sitting or lying position. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

 

 

 

 

[alyheartsux3]

The extreme mood swings many times every day and extreme noise sensitivity is what I am struggling to handle-every other physical withdrawal symptom I can deal with.  This leads me to consider increasing my dosage of Latuda back to 20mg in the morning 30mg at night or 30mg in the morning 30mg at night like my therapist says, but I really do believe all my increased symptoms are withdrawal including extreme mood swings and noise sensitivity...

 

*I have had misophonia ever since I was a kid (chewing sounds made me angry), but I have an extreme noise sensitivity to many many sounds since withdrawal from medications.

 

I don't even know if going up on Latuda would help the noise sensitivity or stabilize my moods. I am at a loss, and I do NOT want to end up in a hospital. They don't know what they are doing there. 

Really don't want to go up- I just don't know what to do because the mood swings are dangerous. Doctors did not know how to taper me slower when I asked in April 2018, and I still don't know how it is possible to go 10% a month off of Latuda. 

I 

[Altostrata]

Please keep your dosing steady until we can unravel your adverse reactions.

 

Are the hives worse at any particular time of day? Where are they on your body?

 

Since the hives have not reduced as you've reduced Latuda, Latuda may not be the cause. It does sound like you had a bad reaction to Horizant, which triggered the hives, or it could be the Horizant conflicted with something else you were taking and you became sensitized to that.

 

Do you remember what your drug cocktail was when the hives first emerged? Did you start any other drug at the same time you started Horizant, including birth control and thyroid hormone?

 

Your drug cocktails have been weird, even for a diagnosis of bipolar disorder, which seems inappropriate for a child of 14. (You've also been tagged with all the fashionable psychiatric disorders.)

 

Have you been seeing the same psychiatrist all along? If so, this person seems to be overly enthusiastic about diagnosis and prescribing all kinds of drugs. He or she has been remiss in loading you up with drugs and not paying attention to drug-drug interactions.

 

Having waves of adverse drug reactions is not "rapid cycling."

 

Please read up on each of your drugs on drugs.com and note the ones with hives as an adverse reaction. Please report back with what you find. I see a rash is an adverse effect of Intuniv:

 

https://medlineplus.gov/druginfo/meds/a601059.html#side-effects

Quote

Some side effects can be serious. If you experience any of the following symptoms, call your doctor immediately:

• fainting
• blurred vision
• rash
• slow heart rate

 

 

I suspect you've become allergic to Intuniv. That pulsing you report in the morning may be because of slow heart rate. You are taking several drugs that can cause this (see drug interactions report).

 

Regarding the lithium, are you getting regular tests for thyroid and kidney functioning?

 

Do you still have "restless legs" (another overused diagnosis)? What's been your experience with magnesium?

 

Please give more detail about the brain zaps. When did they start? Do they occur often? Are they triggered by computer use? How about other bright lights?

 

In reporting your daily symptom pattern, please use  a simple list format with time of day on the left and notation (symptom, drug and dosage) on the right. I need to see the drug schedule interleaved with symptoms, to identify adverse reactions.

[alyheartsux3]

40 minutes ago, Altostrata said:

Please keep your dosing steady until we can unravel your adverse reactions.

Thank you so much for helping. *Very concerned about mood swings and noise sensitivity, not so much hives 

 

Are the hives worse at any particular time of day? Where are they on your body?

I can't say for sure when they are worse. I believe mornings. It is all over my body.  I am not as concerned about the hives anymore as I am the noise sensitivity/ dangerous mood swings, which could lead to a hospital visit... 

 

Do you remember what your drug cocktail was when the hives first emerged? Did you start any other drug at the same time you started Horizant, including birth control and thyroid hormone?

 

 I really can't say. At this point I don't care about having the hives. It is a minor symptom compared to the others. Sorry, I was explaining why I went down on Latuda in addition to the vomitting.

 

Birth control and thyroid medication I have been on for years.  I don't remember what my drug cocktail was when the hives emerged. I was in school beginning to get very sick. I did try several ADHD medications (Adderall, Straterra, Ritalin) and Klonopin. 


 

Your drug cocktails have been weird, even for a diagnosis of bipolar disorder, which seems inappropriate for a child of 14. (You've also been tagged with all the fashionable psychiatric disorders.)

Yes, I was in a residential treatment center where they put me on about 5 psychiatric medications at 15. I was on a combination of 5 psychiatric medications from the ages of 15-21. Last year, at age 21, I started to come off medications. (3: Zyprexa, Lexapro, and Depakote). I was also on Trileptal briefly for 5 months from last summer until October 2017. When I came off in October 2017, I developed constant tingling (pins and needles) in my legs that is still there. This led to trying Gabapentin and Horizant, which led to many more severe symptoms.

 

Have you been seeing the same psychiatrist all along? If so, this person seems to be overly enthusiastic about diagnosis and prescribing all kinds of drugs. He or she has been remiss in loading you up with drugs and not paying attention to drug-drug interactions.

 

I have seen many different psychiatrists. This current psychiatrist I have been seeing for about 2 years, and has started to taper me off of medications. I have always tapered, but I still got very sick. 

 

Having waves of adverse drug reactions is not "rapid cycling."

I have had rapid mood swings since I was a toddler, so I am not sure.. 

 

Please read up on each of your drugs on drugs.com and note the ones with hives as an adverse reaction. Please report back with what you find. I see a rash is an adverse effect of Intuniv:

It looks like a rash is an adverse reaction listed for:

1. Intuniv  (common)
2. Latuda (common)
3. Levothyroxine (less common) 

 

 

I suspect you've become allergic to Intuniv. That pulsing you report in the morning may be because of slow heart rate. You are taking several drugs that can cause this (see drug interactions report).

 

Interesting. I was wondering if this was a withdrawal symptom. I want to come off of Intuniv (been on for 4 years) but am way too unstable to do anything. Thank you for your input! 

 

Regarding the lithium, are you getting regular tests for thyroid and kidney functioning?

Yes, I get regular lithium levels/ thyroid tests. Lithium caused the hypothyroidism, so I take Levothyroxine. 

 

Do you still have "restless legs" (another overused diagnosis)? What's been your experience with magnesium?

 

Are you referring to the tingling I get in my legs/arms? (and other places) Yes. If I were to wear leggings or pants, I would get pins and needles in my legs 24/7. I thought this was withdrawal.  I tried Natural Calm magnesium https://www.amazon.com/gp/product/B000OQ2DL4/ref=oh_aui_detailpage_o01_s00?ie=UTF8&th=1 which I still have- I thought it was causing facial tingling, so I stopped it a few weeks ago. Seems like my moods have become much worse since stopping, but I don't know if it is related. 

 

 

Please give more detail about the brain zaps. When did they start? Do they occur often? Are they triggered by computer use? How about other bright lights?

The brain zaps started when I tried Horizant for 4 days in February, occurred for several weeks with tinnitus and stopped. They started again once I started tapering Latuda in April. It changes constantly, but now it only occurs a few times a day and is triggered by computer use or sudden movements. Not sure about lights. 

 

 

In reporting your daily symptom pattern, please use  a simple list format with time of day on the left and notation (symptom, drug and dosage) on the right. I need to see the drug schedule interleaved with symptoms, to see if any are adverse reactions.

I'm sorry, I'm confused, but I will try again. 

 

 

[alyheartsux3]

In reporting your daily symptom pattern, please use  a simple list format with time of day on the left and notation (symptom, drug and dosage) on the right. I need to see the drug schedule interleaved with symptoms, to see if any are adverse reactions.

I'm sorry, I am not sure I can do this correctly, or if it will help because it changes every day... 

 

I don't think there is a way to see how symptoms like the noise sensitivity or random mood swings with noise sensitivity throughout the day are related to drug dosage? This is what is leading me to want to increase Latuda. 

I thought most of these symptoms were withdrawal related? 

 

[alyheartsux3]

My mood swings with noise sensitivity are getting unbearable. I do NOT want to end up in a hospital-been there, they don't help you. It is 5:30PM and in the past few months, I am usually more stable at this time. 

Now, I am alone, (been isolated because of symptoms) and randomly get irritated, sounds start bothering me- no trigger.

 

I don't want to be impulsive and go up on Latuda, but I don't know what else to do. 

 

 

[Altostrata]

It may be less troubling to you, but the rash indicates a potentially dangerous adverse reaction.

 

Good to hear your psychiatrist is looking to minimize your drugs.

 

Since reducing Latuda did not change the rash, you might consider tapering the Intuniv and see if that makes any difference.

 

https://www.drugs.com/pro/intuniv.html#S5.4

Quote

To minimize the risk of rebound hypertension upon discontinuation, the total daily dose of Intuniv® should be tapered in decrements of no more than 1 mg every 3 to 7 days [see Dosage and Administration (2.5)]. Blood pressure and heart rate should be monitored when reducing the dose or discontinuing Intuniv®. If abrupt discontinuation occurs (especially with concomitant stimulant use), patients should be closely followed for rebound hypertension.

 

If you are taking 3mg Intuniv per day, decreasing by 1mg would be a 33% decrease. This might be too much for someone who already has withdrawal hypersensitivity.

 

Intuniv is an extended-release tablet. If you cut it up, the drug is released immediately. Immediate-release guanfacine is available in 1mg tablets. Its half-life is about 17 hours.

 

(Taking immediate-release guanfacine is not an odd idea. At one time, before (very much more expensive) Intuniv came on the market, immediate-release guanfacine was prescribed for ADHD.)

 

What you can do to taper Intuniv gradually is keep your 1mg Intuniv dosage in the morning, take 1mg Intuniv tablet in the evening with 3/4 of a generic 1mg guanfacine.

 

See how you do for 2 weeks, then reduce another 1/4 of a guanfacine tablet so you're taking 1.5mg altogether at night. Wait 2 weeks, then reduce another 1/4 tablet, and so forth, until you're down to 1mg Intuniv in the morning and 1mg at night.

 

This should reduce some of your symptoms, particularly in the morning.

 

Be sure to keep daily notes of symptoms, when you take your drugs, and their dosages.

 

Please let us know how you're doing.

 

3 hours ago, alyheartsux3 said:

I have had rapid mood swings since I was a toddler, so I am not sure.. 

 

 

This is ludicrous. Mood swings are what toddlers are about. You probably have been misdiagnosed since you were a small child.

 

Do you still live with your parents?

 

3 hours ago, alyheartsux3 said:

Are you referring to the tingling I get in my legs/arms? (and other places) Yes. If I were to wear leggings or pants, I would get pins and needles in my legs 24/7. I thought this was withdrawal. 

 

That would be paresthesia or maybe skin hypersensitivity. It is related to nervous system hypersensitivity from going on and off drugs.

 

This also causes "mood swings" in the form of waves of withdrawal symptoms. Heightened irritability is also a common withdrawal symptom. If you are hypersensitive to noise, it's normal to be irritable about it -- although you need to manage your behavior so as not to annoy other people unnecessarily.

 

Whatever doctor called it "restless legs" doesn't know what restless legs is. Strongly recommend you research any diagnosis you get, along with drugs prescribed for it. Some of your doctors are phoning it in. You will need to practice "defensive medicine" and take charge of your treatment.

[alyheartsux3]

14 minutes ago, Altostrata said:

Thank you so much!!!! I chose to come off of drugs, and I have faith that things will eventually get better on less drugs. However, My recent very severe mood swings many times a day (with vocal tics I never had before, I may add) and increased noise sensitivity have led me to consider going back up on Latuda like my therapist suggests, but I don't know if that would help. Or if the dangerous mood swings is just withdrawal that will pass? 

 

Can Intuniv cause significant withdrawal? I wonder if Intuniv reduction could possibly improve my mood/ result in less interactions? 

 

Do you still live with your parents?

As of June 2018, I live in an apartment with roommates. I have never done well living with my parents, so they are supporting me financially for the next year while I work on my health (along with disability). However, my mood swings are getting so bad that I'm worried about something bad happening. 

 

 

That would be paresthesia or maybe skin hypersensitivity. It is related to nervous system hypersensitivity from going on and off drugs.

 

This also causes "mood swings" in the form of waves of withdrawal symptoms. Heightened irritability is also a common withdrawal symptom. If you are hypersensitive to noise, it's normal to be irritable about it -- although you need to manage your behavior so as not to annoy other people unnecessarily.

I've read a lot of posts on this website. It sounds like this nervous system hypersensitivity improves over time. I'm choosing to wear shorts during the winter to reduce the pins and needles/tingling sensation. (If I wear pants it happens more 24/7 in my legs, in addition to intermittently all over my body.)

 

Whatever doctor called it "restless legs" doesn't know what restless legs is. Strongly recommend you research any diagnosis you get, along with drugs prescribed for it. Some of your doctors are phoning it in. You will need to practice "defensive medicine" and take charge of your treatment.

 

Thanks! I know now. Trying Gabapentin and Horizant to treat the tingling the doctor called "restless legs syndrome" (MRIS came out fine) caused more scary severe withdrawal, adverse reactions, and resulted in increased tingling throughout my body. Definitely going to research before ever trusting a doctor again. 

 

[Altostrata]

You've had a heavy drug burden for many years. This can cause all kinds of symptoms and health problems.

 

Minimizing drugs that are harmful or not doing any good generally improves overall health. They also mix together and cause reactions. Reducing Intuniv is only a first step.

 

My intuition is telling me now that the skin sensitivity on your legs is related to the rash. When did the skin sensitivity start?

 

What are these "vocal tics"?

 

You will need to use non-drug methods to stay calm, see Non-drug techniques to cope with emotional symptoms

[deejay]

ALYHEARTSUX3 : Also very interested to know about these "vocal tics" are you able to describe them?

[alyheartsux3]

Would reinstating Latuda even out my mood? This is an emergency! I do NOT want to end up in a hospital again. They will put me on 20 drugs. 

 

I am out of control with these mood swings and thinking I have ruined my life forever by wanting to be on less medications. 

 

Yes I have been on many many meds for years. My brain has been used to medication since I was 8-not my choice, so I don't think I am ever coming off of drugs. I just didn't want to be a zombie for the rest of my life on 5 or 6 drugs, but this seems worse. 

This is getting out of control with the extreme mood swings many many many times a day with sound sensitivity to at least 500 different sounds no joke. Before coming off drugs I had a sound sensitivity to maybe ONE sound, and I could live my life. I've read sound sensitivity is a withdrawal symptom,, so I'm trying to believe it will get better. 

 

I don't know if I am ever going to be able to work or go to school now or ever have a life because I have come off drugs. Lucky I have disability now-what about the future? I am so unstable.I think I have ruined my life by coming off of drugs if I a have permanent severe noise sensitivity forever. Maybe I should have stayed on 6 pills for life if this is permanent.

 

Too scared to go down on intuniv right now resulting in more withdrawal symptoms.I can't handle anymore and I can't handle this. I am concerned about my moods and the EXTREME increased sound sensitivity since coming down on Latuda. Would reinstating even out my mood? I am only taking Lithium and Latuda now and I don't want to increase Lithium and get lithium toxicity. Don't think I would respond well to any new medications. I'm at a loss and scared. Don't want to lose it around my roommates or end up in a hospital. Been there, they throw 20 pills at you.

 

*I started getting tingling against fabric in my legs 24/7 in October when I came off of Trileptal, which I was on for 5 months. I wonder if it is due to Lexapro, which I was on for a few years. Doctors tapered me off of everything, but I think I came off of Trileptal too fast. Then, psychiatrist sent me to a neurologist who put me on Gabapentin for "restless leg syndrome". On for a month in November-Decembe, came off because of side effects, severe withdrawal including seizures and palpitations, and many other things. Tried Horizant in February for 4 days-adverse reactions. THIS is when the rash started after that. Had skin sensitivity (tingling in legs against fabric) starting in October way before the rash. Since Horizant, it is now intermittent all over my body against fabric in addition to 24/7 legs. 

 

Vocal tics are whenever I'm irritated I make an involuntary groaning sound.Its been happening more and more often every day and it started a few months ago. Its scary but I am waiting for involuntary movements from Latuda. 

 

 

 

 

 

[alyheartsux3]

Decided to try a Magnesium Supplement again before even considering increasing Latuda. Went through all this effort to go down on Latuda and I have no responsibilities while I work on my health. Don't even know if reinstating would improve the increased noise sensitivity or mood since reduction. 

 

A month ago, I tried Natural Calm https://www.amazon.com/Natural-Vitality-Magnesium-Stress-Original/dp/B000OQ2DL4/ref=sr_1_3_sspa?s=hpc&ie=UTF8&qid=1531926897&sr=1-3-spons&keywords=natural%2Bcalm&smid=A1MO67F78MFP1U&th=1  (ionic magnesium citrate) 

I started getting facial tingling, so I stopped it and it got better. 

 

However, I'd rather try Magnesium to calm me down and get facial tingling sometimes, than try going up on Latuda.

 

*****11AM July 18th- Tried a tiny bit of Magnesium Natural Calm and a few minutes later, I became COMPLETELY calm! Still have the noise sensitivity, but I am dealing with it well right now very calm!  

 

Planning to take very small amounts 3-4 times a day (morning with medications (10AM-11AM, afternoon (between 1-3pm), evening, and before bed and track daily. 

[Altostrata]

Has your sensitivity to sound increased since you reduced Latuda? If so, please describe.

 

What exactly do you mean by mood swings?

 

What if the Intuniv is causing many of your symptoms, including hypersensitivity to sound? Did you see that "irritability" is listed as another adverse effect of this drug?

[alyheartsux3]

Yes my sensitivity to noise has become EXTREME since reducing Latuda. Should i go back up to 50mg or 60mg? This is unbearable like 500 plus sounds i may need to go to a hospital. 

 

i do believe i have sensory processing disorder which has worsened since medication withdrawal. Would increasing the dosage of latuda back up help? 

 

I get irritable randomly with sound sensitivity many times throughout the day. 

 

My hypersensitivity to sound became worse and worse with each medication reduction in the past year. I am too scared for anymore withdrawal right now and too unstable. 

 

[alyheartsux3]

Please. Could Latuda increase help the noise sensitivity? (It has become extreme since reducing latuda to 40mg. 

[Altostrata]

It's possible. How about adding 5mg and see what happens? Be sure to keep daily notes on paper about your symptoms, when you take your drugs, and their dosages.

 

While 5mg might seem insignificant, your nervous system is likely hypersensitive, a little can go a long way.

 

If the rash gets worse when you increase Latuda, that would be important to know.

 

After you increase Latuda, if there is no dramatic adverse reaction, you'll want to observe its effects for at least a week before making another drug change. Please let us know how you're doing.

[Altostrata]

Do you have 20mg Latuda tablets? You can make a liquid from one to take an additional 5mg, see